Rheumatic fever

and rheumatic heart

disease

Welcome
If you have been given this booklet then rheumatic fever or rheumatic heart
disease has touched your life. You are not alone. These illnesses affect
many Mori and Pacific families/whnau. Rheumatic fever and rheumatic
heart disease mainly affect children aged between 4-19 years old, but can
also happen in adulthood.

Welcome

It was a shock for Tina when she was told

that her young son Braydon had two valves
that were leaky and the cause was rheumatic
fever.
Despite problems with his first heart surgery,
Braydon is now back to playing sports and is
really active. He takes Penicillin each month
to help keep him well.

Misty-Blues 11th birthday was not the average

birthday celebration but a day in hospital coping
with learning she had been diagnosed with
rheumatic fever.
After having very little energy in the first few
months, Misty-Blue is now coping reasonably
well with her monthly Penicillin injections and
manages to live a reasonably normal life.

Acknowledgements
The Heart Foundation wishes to extend a huge thank you to Tina, Braydon, Misty-Blue and their
families for generously sharing their experiences with rheumatic fever.
We also wish to acknowledge everyone in the clinical community who provided input into the
review of this booklet.

2016 Heart Foundation of New Zealand. All rights reserved. If you would like permission to reproduce in
full or in part or have any queries, please contact info@heartfoundation.org.nz

Contents
About rheumatic fever ....................................................................................... 4
What is rheumatic fever? .......................................................................................... 4
How did I get rheumatic fever? .............................................................................. 4
How can rheumatic fever affect my heart? .......................................................... 5

What happens in hospital? ....................................................................................... 7

What happens when I go home? ........................................................................... 8
Staying well ............................................................................................................ 9
How can I avoid getting rheumatic fever again? ................................................ 9
How long will I need to have Penicillin injections? ............................................ 10
Common questions about Penicillin injections ................................................... 11
Why do I need to tell people Ive had rheumatic fever?................................... 13
What else can I do to stay healthy? ....................................................................... 15
For parents ............................................................................................................. 16
As a parent, what else do I need to know? ......................................................... 16
What about the rest of my family? ......................................................................... 17
Rheumatic fever care plan ................................................................................ 19

Contents

Getting well ............................................................................................................ 7

About rheumatic fever

About rheumatic fever

What is rheumatic fever?

Rheumatic fever is a serious illness that can cause damage in your heart as
well as swelling and pain in your elbows, wrists, knees, and ankles. You may
also notice a skin rash, fever or jerky movements.
Over time, most of these symptoms will go away but any damage to your
heart may stay.

How did I get rheumatic fever?

Rheumatic fever
often starts with a
sore throat caused by
Strep bugs (bacteria)

Rheumatic fever
can damage your
heart (rheumatic
heart disease)

If the Strep throat isnt

treated, it can cause
rheumatic fever

You can get rheumatic fever more than once and this can cause
more damage.

How can rheumatic fever affect my heart?

The heart is a pump with four chambers (rooms) and four valves.

About rheumatic fever

A heart valve acts like a one-way door. It makes sure that blood pumped by
your heart flows in one direction only.
If rheumatic fever damages the heart valves, this is called rheumatic heart
disease.
When the doctor listens to your heart, they may hear extra sounds called
murmurs. A murmur is the sound of some blood flowing the wrong way
through a leaky valve.

Leaky heart valves - rheumatic heart disease

Not everyone with rheumatic fever will have heart valve damage, but people
with badly damaged heart valves may need heart surgery.
When rheumatic fever damages your heart valve, your heart cannot pump
properly and you may feel:

short of breath when lying down flat, needing to sleep with more pillows

more short of breath than others when doing the same exercise

short of breath when doing nothing

a lack of energy

About rheumatic fever

Aortic
valve

Mitral
valve

Tricuspid
valve

Ask your doctor or nurse to explain what rheumatic fever has done to your
heart.

Getting well
What happens in hospital?
During your stay in hospital, you will have many tests, including blood tests
and an echo scan (echocardiogram) to check on your heart.
Sore joints are treated with rest and pain relief.

Getting well

You will be treated with Penicillin to get rid of the Strep bug and receive your
first injection of Penicillin before leaving hospital.
Depending on your symptoms and test results, you may need to stay resting
in hospital for some weeks or months.
People with badly damaged heart valves may need heart surgery.

One of the nurses said Braydons heart

sounded a bit funny, like a train. They referred
us to a specialist in Auckland hospital to get
checked out. After an ultrasound (echo) and
more blood tests, we were told that Braydon
had two valves that were leaky and that the
cause was rheumatic fever.
Tina, Braydons mum
There was some time spent in and out of
hospital before it was confirmed Misty-Blue had
rheumatic fever. This was a stressful period of
time for Misty-Blue and her whnau.
There was lots of travelling to and from the
hospital and sharing the care of Misty-Blue and
the kids at home, while she was in hospital.
Misty-Blues mum
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What happens when I go home?

The doctors will let you know how long you will need to rest when you go
home. As soon as the doctor says it is safe for you to be active again, it is
important to start exercising regularly and to lead a healthy lifestyle.
With proper care and regular Penicillin injections, most people who have
had rheumatic fever lead a normal life.

Getting well

Penicillin is the best antibiotic to prevent rheumatic fever. If you are unable
to receive Penicillin, another treatment will be offered.

It is very important that you dont get rheumatic fever again.

Every strep throat has the potential to lead to rheumatic fever, which
can cause more damage.

To stop you from getting Strep throat, which can cause rheumatic
fever again, make sure you have regular Penicillin injections.
Talk with your nurse about options you have to get your Penicillin
injections, to see what may work best for you.

The experience of spending months in hospital

and now going through the ongoing treatment has
completely changed the course of Misty-Blues
young life. As a result, Misty-Blue wants others in
her community to be aware of what a simple sore
throat can lead to.

Staying well
How can I avoid getting rheumatic fever again?
The best way to prevent rheumatic
fever is to make sure you have regular
Penicillin injections on time.

28
days

Penicillin kills the Strep bugs that

trigger rheumatic fever, stopping any
further damage to your heart valves.

Staying well

Have a Penicillin
injection every

Penicillin injections:

are usually given every 28 days

are given in a muscle near your

bottom or hip

can be painful. Nurses can use local anaesthetic, distraction techniques

and other therapies to minimise the pain

are given by your Community Nurse, District Nurse or Public Health

Nurse. The nurse may come to your home or your school clinic or work
and give the injection. There are also community nurse clinics available.

I said to the nurses every time when they give his injection
please bring some pain relief for Braydon. At the moment, he
uses the buzzy bee and that works. He knows now, hes used to
getting his penicillin, his injection.
Tina, Braydons mum

How long will I need to have Penicillin injections?

You will need to have injections every 28 days for at least 10 years, or until
you are 21 years old, whichever is longer. In some cases, particularly if you
have heart valve damage, you may need to continue Penicillin injections for
longer.

Staying well

You should never stop Penicillin treatment without discussing it first with
your doctor, as you could get rheumatic fever again which can cause more
damage to your heart valves.
Remember to tell your nurse if you are moving house, going overseas, on
holiday, or going away. You may need to get your injection early, or your
nurse may be able to arrange for you to receive your injections elsewhere.

Dont be late - plan the date!

Have a Penicillin
injection every

28
days

Write it on your
calendar

10

Ask your nurse

to text you a
reminder

Ask your family/

whnau to help
you remember

Write a
reminder on
your fridge

Common questions about Penicillin injections

Why do I need to
have an injection
every 28 days?

Is it true the
injection puts
weight on you?

The injections protect you

from Strep bugs at the time
in your life when you are
in close contact with many
people who could have a
Strep infection.

Staying well

Why do I have to
have injections for
so long?

One injection gives you

enough Penicillin to fight the
Strep bug for up to 28 days.
Having an injection every
28 days means that there
is enough Penicillin in your
body to help stop you from
getting rheumatic fever again.

No - the injection doesnt

cause you to gain weight.
Eating too much and not
doing enough activity are the
main causes of weight gain.

11

Staying well

Can I have my
injection early if
Im going away?

What happens
if I miss an
injection?

Yes - it is better to be early

than late. Talk to your nurse
to arrange to have your
injection early.

It is very important that

you dont miss a Penicillin
injection. Missing one means
that you could get Strep
throat which can trigger
rheumatic fever again.

If you forget an injection, ring your nurse to arrange

to get your next injection as soon as possible.

12

Why do I need to tell people Ive had rheumatic

fever?

Staying well

Heart valves damaged by rheumatic heart disease can occasionally get

infected during certain types of operations and dental work. You may need
extra antibiotics to help protect your heart. This is why it is important to
remember to tell every doctor, dentist or dental therapist that you have had
rheumatic fever before you have any medical procedures or operations.
Ask your doctor for a copy of this wallet card. It has
important information about your rheumatic fever. You
should show it to any dentist, dental therapist or doctor
before they treat you.

At the dentist
Everyone has tiny bugs in their mouths. These bugs are usually harmless,
but sometimes when the dentist is working on your teeth, the bugs can get
into your bloodstream. If they reach your heart, the bugs can cause more
damage to the heart valves. This is called endocarditis.
You can look after your teeth and help to avoid any infection by:

having your own toothbrush - dont share with anyone

brushing your teeth twice a day with fluoride toothpaste

avoiding having sweet food and drinks too often

having dental checks every six months

If you are younger than 18 years old, you can get free dental care.
Call 0800 825 583 to find out more.

13

Women and pregnancy

Did you know that when you are pregnant, your
heart has to work 50% harder all day every day?
The hearts hard work starts very early in pregnancy
and keeps increasing until about seven months
pregnant. Ten extra beats a minute doesnt sound
very much but that is 14,000 extra beats a day.
Thats a lot!

Staying well

If you have had rheumatic fever or rheumatic heart

disease, you should have a heart check-up before
you fall pregnant. Make sure you tell your midwife
and doctor that you have had rheumatic fever.
Depending on how badly your heart valves are damaged or if you have had
surgery, you may need extra monitoring and sometimes treatment to ensure
you and your baby stay healthy throughout the pregnancy.
Most women who have had rheumatic fever or rheumatic heart disease will
want to have children at some time. You can plan when the time is right for
you and using contraception is the safest way.
It is safe to have Penicillin when you are pregnant.

Your family doctor, local family planning clinic and/or cardiologist

can talk to you about the best options for you when planning a
family.

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What else can I do to stay healthy?

Even after you have been told by your doctor that it is safe for you to
stop having your regular Penicillin injections, it is important to get
every sore throat checked.

Avoid smoking or being exposed to smoke

Manage your weight

Eat heart healthy foods

Exercise regularly as soon as the doctor says it is safe for you to be

active again.

Staying well

Because rheumatic fever can cause rheumatic heart disease, it is important

not to add further stress on your heart.

When Braydon first came home, Tina had to

make sure he didnt play like usual. He had
to sit down and relax and avoid sports. But a
year on from his heart surgeries, Braydon is
doing well.
At the moment, hes really good. Hes really
active. He likes playing sports but I still keep
an eye on him.
Tina, Braydons mum

15

For parents
As a parent, what else do I need to know?
Sometimes parents will feel guilty and responsible for their child having
rheumatic fever. You may experience feelings like:

Guilt
Anxiety or feeling overprotective

Sleep disturbances
Inconsistency with discipline or
parenting

For parents

Remember, it is not your fault. If your feelings of guilt are strong or you feel
overwhelmed then please talk to your nurse about what support may be
available for you.
Misty-Blues mum found it challenging to see her once chirpy, bouncy
girl in a wheelchair and having very little energy in the first few months.

Helping to make the Penicillin injections more comfortable

As a caregiver or parent it is important you take a few deep breaths and
relax yourself, because if you are feeling very afraid and upset then your
child will find the experience more difficult.
Supporting your child for the first few injections can help them feel more
confident. You may like to think about giving encouragement like Try
counting to 10, you can do it, lets look at this game. This is more helpful
for most children than saying things which make them focus on the injection.
If they are saying it is sore you can acknowledge their feelings by telling
them they are doing a good job and they are trying really hard.

I think that supporting Braydon helps him with what hes going through.
Just helping him by being by his side. He likes that. Its just to support
him throughout the days and times.
Tina, Braydons mum
16

What about theWhen

rest you
of my
family?
cough,
aim into your elbow
Does rheumatic fever so
run you
in thedont
family?
spread germs

There is no good evidence that the risk of rheumatic fever is passed down to
your children. However, some families get rheumatic fever more than others.

For parents

If anyone in your household gets a sore

throat, they need to go to the doctor and ask
for a throat swab. If it is a Strep throat, the
Get every sore
doctor will give antibiotics. These antibiotics
checked
by
must be started straightthroat
away and
taken for 10
a doctor
or nurse
days to fully kill all the Strep
bugs (even
if the
sore throat feels better).

yousore
arethroat
given
Everyone should getIfevery
checked. To find out if there is
medication
foryou:
a
a free sore throat swabbing
clinic near

throat,
phone Healthlinesore
on 0800
611 116take
(all calls are free, even from a
cell phone if youitare
in New
Zealand)
for
all 10
days,or
if website
you are
visit the Ministry even
of Health
www.health.govt.nz
feeling better

You dont want to see other people go through it. I even said to my
sisters and brothers, make sure if your kids have sore throats or other
symptoms, take them to the hospital. Because you dont want them to
go through what Braydons gone through.
Tina, Braydons mum

17

Can you catch rheumatic fever?

You cannot catch rheumatic fever from another person, but you can easily
catch the Strep bug that triggers rheumatic fever through:

coughing

kissing

sharing cups

sharing toothbrushes

For parents

Bugs are often shared while you are sleeping close to other people. To help
to stop the spread of Strep bugs
and keep yourself and your family/
whnau healthy, try creating your
own sleep space by:

sleeping in your own bed

or top and tailing.

Keeping Strep bugs away

People are more likely to be exposed to Strep bugs when living in an
overcrowded, damp house. Keeping your house warmer and drier can help
prevent your family from developing a Strep throat and rheumatic fever. You
could:

open windows in the kitchen and bathroom to let steam out

wipe down the inside of your bedroom windows if they are wet when
you wake up

dry your washing outside or in the garage.

If you need help to make sure your house is dry and warm speak to a
social worker to find out if you qualify for assistance.

18

Rheumatic fever care plan

After going through this booklet with your nurse, you should be
able to check off the following statements:
I understand what has happened in my heart and the heart
diagram on page 6 has been labelled for me
My nurse has given me a wallet card about infective
endocarditis and I know that I need to show this card to all the
doctors, dentists and dental therapists I go to
I have talked to my nurse about local support available to help
me make my home warmer and drier
I have talked to a social worker, and a Mori, Pacific health and
cultural support worker about what support is available for me and
my family/whnau
I know what to do to get my next Penicillin injection

My next Penicillin injection

Time and date:
Place:
Nurse name:
Nurse contact details:

Hearts fit for life, for this generation and the next

About rheumatic fever

The Heart Foundation is the charity that works to stop New Zealanders dying
prematurely from heart disease. We are committed to helping people with heart
disease live full and productive lives through better support, care, research and
prevention.

If you would like to assist us to help other people like

yourself, please consider donating
To donate:
Visit: www.heartfoundation.org.nz/donate
Phone: 0800 830 100

Heart Foundation, PO Box 17160, Greenlane, Auckland 1546

T 09 571 9191 F 09 571 9190 E info@heartfoundation.org.nz
Revised and printed November 2016
ISBN 978-1-877571-85-5 (print) ISBN 978-1-877571-86-2 (pdf)
The Heart Foundation of New Zealand is a registered charity (CC23052) under the Charities
Act 2005

As a charity, we thank our generous donors

for helping bring this resource to life.

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